I’m always curious and interested in scholarship on disability by actual disabled people. I came across Lillie Lainoff’s work on Twitter and am delighted that she was willing to share an introductory note and excerpt from a recent paper on disabled motherhood. –Alice
The following excerpt is from my research paper on the societal policing of disabled motherhood. This section explores society’s preoccupation with stereotypically ‘positive’ female traits that are associated with being a ‘good’ mother, and how these traits are juxtaposed with stereotypical ‘negative’ female traits that society associates with disability. The rest of the paper places the policing of disabled motherhood into context, starting with forced sterilization laws of the 20th century to present-day doctors acting as ‘gatekeepers’ for who is allowed to become a mother.
Because of word constraints, I could only focus on physical disability – in the future I would like to expand this work to include mental disability and illness, as well as neurodiversity. I chose to write about disabled motherhood through the lens of femininity because of the many disability theory texts that explore the concept of the disabled body as the feminine body. When the disabled body as the feminine body is put into the context of motherhood, however, it becomes more complicated.
This topic is highly personal to me. As a disabled woman who would like to have children one day, I have a vested interest in this discourse. But, as I discuss in my paper, there is a lack of scholarship in this area. The policing of disabled motherhood does not just stop at the tangible, concrete experiences of individuals – it is in the abstract of social ideals, in the way that disability and motherhood are depicted as incongruous identity states. To stop the policing of disabled motherhood, it is necessary to assess every level of experience that the stigma permeates – the intention of this paper, therefore, is to fill a gap in the discussion that is both vital and overlooked.
Excerpt from Disabled Motherhood: Caregiving, Gatekeepers, and Reproductive Justice
Outside the realm of forced sterilization, very little attention is given to disabled reproduction and prospective disabled mothers. Disability, both as an abstract idea and a concrete difference in ability, is already something that makes people uncomfortable; the associated stigma leads to a lack of public and open discourse about anything related to disability. While in more recent years disability rights movements have worked to combat the idea of disability as a taboo, there is still a noticeable silence surrounding disability and motherhood – to society, they are not compatible states of being, therefore the two are not discussed in association with each other. Two organizations provide almost all the non-ableist available data on disabled parents. The founder of the organization Through the Looking Glass (centered in the United States), along with a renowned disability studies professor, assert that: “parenting has been the last frontier for people with disabilities and an arena in which parents are likely to encounter prejudice.”[i] Whether or not one agrees that the policing of parenting is the last form of discrimination disabled individuals have to overcome, collecting and allocating resources for prospective and current disabled parents is surely a major priority of disability rights activists. The prejudice that Kirshbaum and Olkin discuss is one practiced by nearly all of the stakeholders involved.
From a young age, the definition of motherhood is mapped onto the able female body. A mother must be caring and nurturing, must take care of their children in an active way (ex. performing domestic activities like cooking meals for them, cleaning up their toys, changing their diapers, etc.) For disabled girls and disabled women, this cultural assumption is one that requires them to reassess the understanding imposed upon them by dominant norms. As Corbett O’Toole writes in her part-memoir, part-disability rights history narrative, part critical disability theory Fading Scars, that as disabled young girls “we never discussed the possibility of having children. Most of us were unclear about whether the definition of ‘mother’ included disabled women at all.”[ii] Furthermore, parenthood is presented as particularly unattainable for disabled women:
The archetype for motherhood embeds the nondisabled body so deeply that any deviation from that illusionary body is deemed unacceptable… We celebrate the glowing pregnant woman, the beautiful young women holding her new baby, and the self-sacrificing mother who creates the successful child.[iii]
The juxtaposition of the positive traits of femininity (the ones associated with caregiving and motherhood) with the stereotypical negative traits of disability (the traits associated with femininity like weakness and fragility) is one that society cannot seem to overcome. This inability to associate the two states of being, motherhood and disability, operates at every level of experience. O’Toole and her girlhood comrades’ confusion over whether the realm of motherhood could one day include them was not a sentiment established in a vacuum. O’Toole remembers one particularly poignant moment with her father, a Catholic Irish-American, after he once again began the rant he would give one of his three teenage daughters about how he could not wait until they had children of their own so they could understand the exasperation they put him through. “…He looked up to see which daughter he was yelling at this time. When he realized it was me, he stopped his rant mid-sentence and stammered ‘Oh forget it.’ In that moment I realized…he believed that I would never have children, never raise children. I would never be a mother.”[iv] O’Toole’s experience is not unique – advocate Trish Day firmly believes that “disabled girls… are not generally raised to believe that they can have ‘normal’ lives – marriage, long-term partners, a job, a home of their own, and their own children.”[v] Disability negates the traditional expectations for young girls: for O’Toole, “no one ever talked to me about becoming a mother, although that message was embedded in everything the adults told my sisters.”[vi]
When disabled women do choose to try to become a parent, however, push back comes from all avenues of the process and their lives – many family members and friends question the choice for a disabled person to have a child on the basis of their ‘limited’ capabilities. While disabled people in general are discouraged from parenting, disabled women are targeted to an increased degree. Corbett O’ Toole posits this discrimination on the tendency for the media to portray disabled parenthood as a disabled father “with a strong and healthy nondisabled wife,” that is, on the rare occasion they portray disabled parenthood at all – “The implicit assumption is that she is the caregiver. When the disabled parent is the primary caregiver, challenges to their parenting come in many forms.”[vii] FR, a disabled woman with exhaustion and chronic pain, has been told that it would be “selfish” of her to have a child.[viii] Many disabled women recount stories of being approached by strangers who asked where the child’s parents were, or if they have the ability to be a parent. One particularly harrowing account of a woman with cerebral palsy describes how when she told her mother that she was pregnant with twins, her mother replied, “Now your husband has three babies.”[ix] Carrie Killoran, who experienced similar opposition, firmly links the discrimination against prospective disabled mothers with societal conceptions of motherhood:
“Before I got pregnant, I was told by my father that it would be irresponsible of me to have a baby because I would be an unfit mother. This is the view of most of society… On the contrary, I turned out to be one of the fittest mothers I know. The ability to be a good mother does not reside in the ability to chase around after a toddler, nor in the ability to teach your child how to ride a bike.”[x]
Similarly to Corbett O’ Toole, Killoran believes that society’s unwillingness to accept the possibility of disabled motherhood is intrinsically linked to its unwillingness to accept the idea that there is no one set of requirements a mother must be able to fulfill.
Footnotes and References
 Some of this may also stem from asexual objectification, or the practice of mapping lack of sexual desire onto disabled bodies (Harlan Hahn).
 Initials used to protect anonymity.
[i] Kirshbaum and Olkin qtd. in National Council on Disability, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children, September 27 2012.
[ii] Corbett O’Toole, Fading Scars (Forth Worth: Autonomous Press, 2015), pg. 247
[iii] O’Toole, pg. 248-249
[iv] O’Toole, pg. 247
[v] Day qtd. in Laura Hershey, “Disabled Woman’s Lawsuit Exposes Prejudices,” Ragged Edge Magazine, November 16 2013.
[vi] O’Toole, pg. 247
[vii] O’Toole, pg. 250
[viii] Personal Correspondence with FR, Twitter
[ix] Rocking the Cradle
[x] Carrie Killoran, “Women with Disabilities Having Children: It’s Our Right Too,” Sexuality and Disability 12, 1994.
Sources cited in excerpt:
FR (anonymous). “I keep going back and forth over whether it’s ‘fair’ to a potential child to have them if I’m going to be limited in my parenting because..” continuation, “Of my disability (exhaustion and chronic pain). I’ve been told it would be selfish of me to have a child, and it’s hard to fight that.” April 14 2017. 11:14 PM. Tweet.
Hershey, Laura. “Disabled Woman’s Lawsuit Exposes Prejudices.” Ragged Edge Magazine. November 26 2013. http://www.raggededgemagazine.com/extra/hersheychamberstrial.html
Killoran, Carrie. “Women with Disabilities Having Children: It’s Our Right Too.” Sexuality and Disability 12 (1994).
National Council on Disability. Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children. Washington: National Council on Disability, 2012. Accessed April 20 2017. http://www.ncd.gov/publications/2012/Sep272012
O’Toole, Corbett. Fading Scars: My Queer Disability History. Fort Worth: Autonomous Press, 2015.
Lillie Lainoff is an English major at Yale University. She will return for her final semester (Fall 2017) to complete a series of short stories about disability and femininity, and what it means to find your identity as a young disabled woman, as a part of the Yale Creative Writing Concentration. She is represented by Jennifer Wills and Nicole Resciniti of The Seymour Agency for her novel THE KEEPING HOUSE, the first in a young adult speculative fiction trilogy about a world where the disabled are hunted and persecuted. The novel features a cast of almost all disabled characters. She is currently working on a new own voices manuscript that combines her experiences as an invisibly physically disabled woman and her love of fencing (she was one of the first physically disabled athletes to individually qualify for an NCAA Championship.) Her work, including fiction, non-fiction and poetry, has been published in the Outlook section of The Washington Post, as well as Scholastic writing anthologies and collegiate literary magazines.
Official website: http://www.lillielainoff.com/about